Sally Satel on EconTalk, talking about organ donation (podcast)

PERMANENT LINK | JULY 24, 2017 Sally Satel on Organ Donation EconTalk Episode with Sally Satel Hosted by Russ Roberts	PRINTEMAIL  SHARE
You Are What You Eat...

Sally Satel, psychiatrist and resident scholar at the American Enterprise Institute, talks with EconTalk host Russ Roberts about the challenges of increasing the supply of donated organs for transplantation and ways that public policy might increase the supply. Satel, who has received two kidney donations, suggests a federal tax credit as a way to increase the supply of organs while saving the federal government money. She also discusses the ethical issues surrounding various forms of compensation for organ donors.

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Readings and Links related to this podcast episode

Related Readings HIDE READINGS

This week's guest: Sally Satel's Home page Sally Satel on Twitter. This week's focus: "The Kindest (Tax) Cut: A Federal Tax Credit for Organ Donations," by Sally Satel and Alan Viard. Tax Notes, June 12, 2017. PDF file. "A College Tuition Payment for Your Spare Kidney?," by Sally Satel. Slate, September 13, 2016. Additional ideas and people mentioned in this podcast episode: "Here's Looking at You, Kidney: How and why I became an organ donor -- and how I kept people from talking me out of it," by Virginia Postrel. Vpostrel.com, Texas Monthly, June 2006. "Desperately Seeking a Kidney," by Sally Satel. The New York Times, December 16, 2007. A few more readings and background resources: National Organ Transplant Act of 1984. Wikipedia. "Life-Saving Incentives: Consequences, Costs and Solutions to the Organ Shortage," by Alex Tabarrok. Library of Economics and Liberty, August 3, 2009. "How Free-Market Kidney Sales Can Save Lives--And Lower the Total Cost of Kidney Transplants," by Kathryn Shelton and Richard B. McKenzie. Library of Economics and Liberty, March 5, 2012. Health Care, by Michael A. Morrisey. Concise Encyclopedia of Economics. A few more EconTalk podcast episodes:  Virginia Postrel on Style. EconTalk. November 2006.  Tina Rosenberg on the Kidney Market in Iran. EconTalk. September 2015.  Alvin Roth on Matching Markets. EconTalk. July 2015.  Michael Munger on Exchange, Exploitation and Euvoluntary Transactions. EconTalk. June 2011.  The Economics of Organ Donations with Richard Epstein. EconTalk. June 2006.

Highlights

Time

Podcast Episode Highlights HIDE HIGHLIGHTS

0:33

Intro. [Recording date: July 6, 2017.] Russ Roberts: Sally Satel recently wrote an article with Alan Viard entitled "The Kindest (Tax) Cut: A Federal Tax Credit for Organ Donations," and that's going to be our topic for today.... So, you bring a special perspective to kidney donations. Talk about your personal story. Sally Satel: Yeah. I got a kidney in 2006; and then I got another kidney a year ago, almost a year ago today. And, when I got my first one it was sort of a surprise. A lot of people who know that they're going to need a kidney--well, by definition, they know that they're going to need a kidney. What I meant is that they have certain illnesses--they are either diabetic, or they've got lupus, severe hypertension that's been poorly managed for a while, high blood pressure. People know they are at risk for this, for kidney failure. But my case was sort of a surprise. I just went to the doctor for a regular checkup. This is the part of the story that scares everyone, because I felt completely fine. And during a routine blood draw, found out that I had--well, that I had kidney failure. Which is rather easy to diagnose. It's a test called a creatinine level. But when you go for a regular blood draw, a routine blood draw, that's one of the indexes they measure. So, they tested it again, and that was the same. So, the clock was ticking for me, because I knew from my medical training that if you have kidney failure, you need a new kidney, or you will languish on dialysis for years. And no matter how long you are on dialysis, your life will be prematurely shortened. I mean, people have lived for 20 years, even a little longer, on dialysis. Some people tolerate it better than others. That's a process where your blood is cleansed of toxins about 3 times a week for about 4 hours at a time; you go to a clinic. Most people feel very debilitated by it. The average person on dialysis can't hold a job. But some do. And, some people--it isn't as psychologically devastating to some folks. But others find it so distressing, they are actually--suicide is not that unusual. So, the idea of being tethered to that machine, while, granted, it would keep me alive. Now, if my liver had failed and I didn't get a transplant, that would be it. So, kidney dialysis does keep people alive for awhile. But it just seemed like a really, really half a life. So, I knew I needed a kidney, but I didn't know exactly when I would need dialysis. So, as I said, the clock started ticking. And it turned out I had a good year before the function got to the point where I really was becoming physically debilitated. But it was very hard finding a donor. And that's what kind of galvanized me, this whole issue of the shortage. But, just in terms of finding a donor, as I say, it was extremely difficult. It's not like every day you ask people for a body part. And I didn't have--I have a very tiny family. And, to make a long story short, none of them--I didn't feel I could ask any of them. And in fact I never really asked anyone. I would do it all differently if, heaven forbid, there is yet a third time I have to go through this--see, I'm very nice to my interns. But I would just talk about it with folks and wasn't even being coy. I just sort of thought magically, 'Oh, well some people will think of being a donor, and it will work out.' But it became pretty clear that it wasn't working out. And a lot of people actually said they would do it; and I appreciate that in that I know they wanted to be--I know they felt empathy for my situation; but in the end, basically, a lot of them got cold feet and backed out. And then you're in this terribly awkward position, because you really can't be angry. I mean it's an enormous thing to ask, and it would be incredibly presumptuous to have the expectation that they owed you anything. So, I was really getting very demoralized and about to get ready to go on dialysis. And, Virginia Postrel, who I knew, not very well, had been at a cocktail reception somewhere--this was in November of 2005--and she ran into a mutual friend and asked that friend how I was. And the friend said, 'Not so hot. She needs a kidney.' And, Virginia went--I think the next went to her computer--I remember the subject line; I still have a printout of her email--it said, 'Serious Offer.' And she said, 'So-and-so told me you needed a kidney, and if I match, I will do it.' And I think she followed up a few minutes later with another email: 'I won't back out.' And, so, she went through with it. This was March of 2006. And I'm almost as grateful to Steve, her husband, as to her, because that was one of the reasons that two of my friends, other of my friends who had seriously considered donating did not go through with it--because their spouse basically said, 'It's the kidney or a divorce.' [More to come. 6:48]

Organ transplantation in Iran

Robert Gutman draws my attention to this article from the English language Iranian Financial Tribune:  Sunday, April 23, 2017 Strides in Organ Transplant

I'm not sure where the claim in the first sentence of 50,000 organ transplant "surgeries" comes from, but the rest of the article (which seems to talk about a total closer to 5,000 transplants) is an interesting view of the situation in Iran.


"Over 50,000 organ transplant surgeries were conducted during the last fiscal year that ended on March 20.

Around 2,500 kidney, 802 liver, 119 heart, 30 pancreas and several intestine and lung as well as 1,040 bone marrow transplants were performed in Iran during the period, said Seyyed Mohammad Kazemeini, head of the Organ Transplant Management Office at the Health Ministry.

“This impressive number of transplant surgeries has helped save many lives as well as more than $1.8 billion in foreign exchange, as patients would otherwise have paid huge amounts for the medical help abroad. Some were even treated free,” the official was quoted as saying by ISNA.

However, he regretted that insurance companies still refuse to cover expenses of organ transplants despite a government directive last year.

“Insurance companies are not complying and the Health Ministry has to draw on its own resources to provide free services for some patients,” he said and hoped the ministry’s support would continue.

“During this year’s New Year holidays (March 21- April 2), 93 transplants were performed,” which shows the preparedness of the medical fraternity.

Iranian organ transplant teams are capable of providing assistance and training to neighboring countries, he said.

Last year a team of experts from Mashhad, capital of the northeastern Khorasan Razavi Province, carried out 47 renal transplants in Afghanistan, and medical teams from Shiraz, capital of the southwest Fars Province, conducted 20 operations in Pakistan and Tajikistan.

Shiraz University of Medical Sciences is known for its accomplishments in liver transplants and the hospitals under its coverage are among the top medical centers in the world with regard to the number of surgeries performed. On average, 500 liver transplants and 300 kidney surgeries are annually undertaken in Shiraz, which also has the distinction of performing the first kidney transplant in Iran in 1968 at the prestigious Namazi Hospital.

A specialized hospital is now planned to be established in Shiraz for organ transplants.

Iran ranks third worldwide in organ donation and is the only country in the world that has addressed the shortage of transplant organs through a legal payment system since 1988 when living non-related donation (LNRD) was legalized,  making it the only country where organ sale is legal.

There are currently 46 organ transplant centers in the country and 25 facilities for organ donation.

  Increase in Brain-Dead Organ Donation

According to Kazemeini, people’s tendency to donate organs of brain-dead patients in their families has increased significantly.

“Last year, 57% of transplant kidneys were donated by brain-dead patients,” he said.

In the past organ donation or sale by living people was predominant. The acceptance of organs of brain-dead patients has improved remarkably due to legal and religious decrees and widespread awareness campaigns on the issue.

Organ transplant is a medical procedure in which an organ is removed from one body and placed in the body of a recipient, to replace a damaged or missing organ.

Today, over 1.4 million people have voluntary organ donation cards in the country. On average, 700 organ donations (nine per million people) are made annually according to official statistics.

Organs that have been successfully transplanted include heart, kidney, liver, lung, pancreas, intestine, and thymus. Worldwide, kidneys are the most commonly transplanted organs, followed by liver and heart. Organ donors may be living, brain dead, or dead via circulatory death.

In the fiscal year that ended in March 2016, from among the 8,000 people confirmed as brain dead at Iranian hospitals, 1,400 kidneys (and 2,300 organs) were donated.

Kidney transplants account for nearly 75% of all organ replacement surgeries while liver and heart transplants comprise 22% and 3% of the total number. More than half of all transplanted kidneys (56%) were from brain-dead donors and 44% were from living people.

Kazemeini had earlier pointed to Iran’s top position in the field of kidney transplant in the Middle East. On average, 3,000 kidney transplants are conducted every year and Iranian surgeons have transplanted over 35,000 kidneys so far."

Mohammad Akbarpour on Iran's kidney market

My colleague Mohammad Akbarpour at Stanford GSB is featured in their newsletter.  

He thinks about kidney transplantation from a number of different angles...here's a snippet.

Is It Ever OK to Sell (or Buy) a Kidney?

"Iran’s paid kidney market emerged after the country’s revolution at the end of the 1970s. In the early ’80s, foreign sanctions against the government inhibited its ability to get dialysis machinery. The number of Iranians needing a kidney transplant, however, kept increasing, so in 1988 the government organized a system that regulated and funded kidney transplantation. Their system included compensation for donors.

Officials euphemistically described the money given to each donor as a “gift,” says economist Mohammad Akbarpour, an assistant professor of economics at Stanford Graduate School of Business, who, has been working with several colleagues to study Iran’s market and unpaid kidney exchange markets globally. “They were paying for it, but using different words,” says Akbarpour. The system worked so well that the kidney transplant wait list in Iran was nearly eliminated by 1999.

“We have this discussion in the West about what would happen if you have a paid market for kidneys,” says Akbarpour. “The expectation has been that poor people will be selling their kidneys to rich people. But the debate has been largely based on speculations, as opposed to evidence.”

Akbarpour looked at five years’ worth of data about kidney sales and transplantation in the country, and his preliminary findings show that the average wealth of those buying kidneys is almost exactly the same as the average wealth of Iranians. Most of the payment for each transplant comes from the patient, not the government.

“It’s not just rich people who can buy a kidney in Iran,” he says. “Even poor people find the money for it, because it’s so valuable. There are also charities they can tap.”

But one suspected consequence of a cash market for kidneys did turn out to be true: Poor people sell kidneys far more than any other economic group. In Iran, most kidneys come from those whose incomes are in the bottom 25% of earners."

Opposition to kidney sales in Iran

Afshin Nikzad points me to the following story in Farsi, and provides the translation below. He writes:

http://donya-e-eqtesad.com/SiteKhan/1136026/

"I edit/copy parts of the article from google translate (since it didn't give a great translation) : 

The 78 years old residing in America in an interview with US media said he had been in America for a kidney transplant and doctors had told him he should stay on the waiting list for a kidney transplant from brain death or that of one of his two children. All catch. But he found a third way through his Iranian birth certificate: buying a kidney in Iran. In his interview he talked about the youth in Iran who from the poverty and desperation were lined up to speak to him for selling their kidney.

Doctor, "Ali Husseini,” the head of the Transplantation Society of the Middle East in response to the letter, said: "Buying and selling kidney with strangers is dirty and inhumane and is banned even in countries like India and Pakistan" He also said “among all the thousands seller in the country there is not a single a rich person, all were poor and sold the kidney from poverty and desperation; undoubtedly they  have not donated their kidney.”

Dr. Mohammad Reza Ganji, head of the Iranian Society of Nephrology said “… In the past two years  63% of the transplants have been from brain-dead (that is two thousand and six hundred transplants), and this is statistically significant in the world."

The Iranian market for kidneys

The AP has published this descriptive story about the Iranian market for kidneys:
IN IRAN, UNIQUE SYSTEM ALLOWS PAYMENTS FOR KIDNEY DONORS BY NASSER KARIMI AND JON GAMBRELL

Some paragraphs from the story:

"The AP gained rare access to Iran's program, visiting patients on dialysis waiting for an organ, speaking to a man preparing to sell one of his kidneys and watching surgeons in Tehran perform a transplant. All of those interviewed stressed the altruistic nature of the program - even as graffiti scrawled on walls and trees near hospitals in Iran's capital advertised people offering to sell a kidney for cash.
...
Iran started kidney transplants in 1967 but surgeries slowed after the 1979 Islamic Revolution and the storming of the U.S. Embassy in Tehran, in part due to sanctions. Iran allowed patients to travel abroad through much of the 1980s for transplants - including to America. But high costs, an ever-growing waiting list of patients and Iran's grinding eight-year war with Iraq forced the country to abandon the travel-abroad program.

In 1988, Iran created the program it has today. A person needing a kidney is referred to the Dialysis and Transplant Patients Association, which matches those needing a kidney with a potential healthy adult donor. The government pays for the surgeries, while the donor gets health coverage for at least a year and reduced rates on health insurance for years after that from government hospitals.

Those who broker the connection receive no payment. They help negotiate whatever financial compensation the donor receives, usually the equivalent of $4,500. They also help determine when Iranian charities or wealthy individuals cover the costs for those who cannot afford to pay for a kidney.

Today, more than 1,480 people receive a kidney transplant from a living donor in Iran each year, about 55 percent of the total of 2,700 transplants annually, according to government figures. Some 25,000 people undergo dialysis each year, but most don't seek transplants because they suffer other major health problems or are too old.

Some 8 to 10 percent of those who do apply are rejected due to poor health and other concerns. The average survival rate of those receiving a new kidney is between seven to 10 years, though some live longer, according to Iranian reports.

In the United States, about a third of kidney donations come from living donors. The average kidney from a deceased donor lasts 10 years, while one from a living donor averages about 15 years, according to Dr. David Klassen of the United Network for Organ Sharing, or UNOS, which oversees the U.S. transplant system. Recipients of living-donor kidneys in the U.S. fare better in part because they haven't been on dialysis as long before their transplant."

A skeptical view of the Iranian market for kidneys, from Shiraz

Here's an article (gated) from a recent issue of Transplantation, describing how the transplant program in Shiraz is discouraging patients from the (legal) market there for buying kidneys from living unrelated donors (they impose a six month waiting time for such transplants). Most patients who have transplants at Shiraz are receiving deceased donor kidneys.

Transplantation:

June 2016 - Volume 100 - Issue 6 - p 1165–1169

doi: 10.1097/TP.0000000000001164

In View: Around the World

Paid Living Donation and Growth of Deceased Donor Programs

Ghahramani, Nasrollah MD

Abstract

Abstract: Limited organ availability in all countries has stimulated discussion about incentives to increase donation. Since 1988, Iran has operated the only government-sponsored paid living donor (LD) kidney transplant program. This article reviews aspects of the Living Unrelated Donor program and development of deceased donation in Iran. Available evidence indicates that in the partially regulated Iranian Model, the direct negotiation between donors and recipients fosters direct monetary relationship with no safeguards against mutual exploitation. Brokers, the black market and transplant tourism exist, and the waiting list has not been eliminated. Through comparison between the large deceased donor program in Shiraz and other centers in Iran, this article explores the association between paid donation and the development of a deceased donor program. Shiraz progressively eliminated paid donor transplants such that by 2011, 85% of kidney transplants in Shiraz compared with 27% across the rest of Iran's other centers were from deceased donors. Among 26 centers, Shiraz undertakes the largest number of deceased donor kidney transplants, most liver transplants, and all pancreas transplants. In conclusion, although many patients with end stage renal disease have received transplants through the paid living donation, the Iranian Model now has serious flaws and is potentially inhibiting substantial growth in deceased donor organ transplants in Iran.

German organ transplant law should be amended or reinterpreted to allow kidney exchange: my op-ed in Der Tagesspiegel

During my recent visit to Germany, I spoke with a number of people about the fact that the German transplant law effectively outlaws kidney exchange.  I was invited to write an op-ed on the subject for the German newspaper Der Tagesspiegel, and it has just appeared:

OrganspendenDeutschland muss sein Transplantationsgesetz ändern

In den USA können Patient-Spender-Paare untereinander ein Organ spenden, in Deutschland ist dieser Tausch verboten. Das muss sich ändern. Eine Position. 

ALVIN E. ROTH

Normally at this point I would use Google Translate to give a sense of the article, but in this case, since I wrote the op-ed in English, I can give you the original:

German organ transplant law should be amended or reinterpreted to allow kidney exchange

By Alvin E. Roth[i]

Kidney failure is epidemic around the world, and a shortage of organs for transplantation condemns many patients to dialysis, and early death. 

Most transplantable organs come from deceased donors, and there aren’t enough to fill the need. But because healthy people have two kidneys and can remain healthy with one, a healthy person can donate a kidney to a sick person.  A living-donor kidney works better than a deceased-donor kidney.

In the U.S. we now have around as many living donors as deceased donors (although we still have more deceased-donor transplants, since a deceased donor donates both kidneys).

But living donation isn’t always possible, even when a willing donor is available, because a kidney must be well-matched to its recipient. Often the life-saving gift cannot be given, because the donor’s kidney is incompatible with the patient. (It is now sometimes possible to successfully transplant an incompatible kidney, but, like a deceased-donor kidney, this does not keep the patient as healthy for as long as would a compatible living-donor kidney.)

In the U.S., there is a way for incompatible patient-donor pairs to help each other, through what we call kidney exchange, or kidney paired-donation. In its simplest form, two incompatible patient-donor pairs are identified by their doctors such that each patient is compatible with the kidney of the other patient’s donor. Then four surgeries are performed, two nephrectomies and two transplants, so that each donor gives a kidney and each patient receives a compatible kidney. Kidney exchange has become a standard form of transplantation in the U.S., and has saved thousands of lives. (This is one of the “matching” markets I helped design, and wrote about in my recently translated book, Wer kriegt was - und warum?.)

Notice that no money changes hands in this paired donation. It is just an exchange of gifts between two patient-donor pairs, which allows each donor to save a life and see his intended recipient restored to good health.

Laws around the world prohibit buying a kidney for transplantation, because of fear that allowing organs to be sold would exploit the poor and vulnerable. (The single exception is Iran, which has a monetary market for kidneys.) But German transplant law  imposes a severe further restriction: a patient may receive a living-donor kidney only from a member of his or her immediate family. This means that, unless a judge intervenes, kidney exchanges are illegal in Germany. (This law also restricts the number of direct living donations in Germany compared to countries like the U.S., in which uncles, cousins, friends, colleagues, members of the same church, etc., are often living donors.)

I surmise that the reason for this strict limitation in German law is to remove any possibility that a kidney being transplanted has been purchased rather than freely given. But if when you want to give a kidney to your brother there is no suspicion that you are a paid organ-seller, you should remain above suspicion even if your kidney is incompatible with your brother. Kidney exchange allows you to give a kidney and save a life, and have your brother’s life saved. Kidney paired donation is a mutually beneficial exchange of life-saving gifts, not a commercial transaction.

The U.S. law that includes the prohibition on organ sales is the National Organ Transplant Act of 1984.  When American surgeons explored kidney exchange in the first decade of this century, it wasn’t initially clear what its legal status might be, but in 2007 Congress passed an amendment to the NOTA making kidney exchange explicitly legal.  Kidney exchange is legal elsewhere in Europe, and is well developed in the Netherlands and Britain. A similar amendment to the German law, or even instructions to judges that kidney exchanges should be allowed after being examined, could save the lives of many patients in Germany, without opening to door to commercial transactions in body parts.

---

[i] Alvin Roth, a professor of economics at Stanford University, shared the 2012 Nobel Prize in Economics for his work on market design. His recent book about markets has just appeared in German translation, Wer kriegt was - und warum?: Bildung, Jobs und Partnerwahl: Wie Märktefunktionieren

The black market for kidneys in South Asia

It sounds like you can buy a kidney in India, and have it transplanted in Sri Lanka. But it isn't clear how large the market is compared to the vast worldwide demand or even to the number of legal kidney  transplants around the world (in the US we have about 17,000) a year). When I say it isn't clear, I mean that the story is based mostly on anecdotal information from market participants...
However I can supply an additional anecdote about social media: almost every morning as I get ready to publish my blog post for the day, I delete spam "comments" on previous posts about kidneys, offering phone numbers to call if you want to sell yours...

Al Jazeera has the story:
Need a kidney? Inside the world’s biggest organ market
The illicit kidney trade in South Asia has exploded as brokers use social media to find donors.

""If you have the money and want it fast, you come here. I will find you a donor and you can go home with a new kidney in a month," Vikas told Al Jazeera, speaking on the condition that his real name not be published.

"According to the World Health Organisation (WHO), South Asia is now the leading transplant tourism hub globally, with India among the top kidney exporters. Each year more than 2,000 Indians sell their kidneys, with many of them going to foreigners.

"This gaping hole between demand and the legal supply of kidneys is being filled by what may be the world's biggest black market for organs, which criss-crosses India, Nepal, Bangladesh, Pakistan, Sri Lanka and Iran.

"However, in recent years, Sri Lanka's capital Colombo has become the new nerve centre of this network, where most transplant operations are carried out. In recent years, Sri Lanka has attracted kidney buyers from as far afield as Israel and the United States.

"This development came after India tightened its rules on organ exchanges in 2008, following the arrest of a "kidney kingpin" running one of the world's largest kidney trafficking rings. Many donors are also taken to Iran, the only country in the world where selling kidneys is legal, though not to foreigners.

"Anurag, one of the top names in brokering circles, told Al Jazeera that many agents in India and Bangladesh were working at the behest of individual doctors or hospitals based in Colombo who offered "complete packages" to foreign recipients, with prices ranging from $53,000 to $122,000.

"It covers everything - hospital bill, doctor's fee, payment to the donor, his travel and accommodation cost, and, of course, broker's commission. This is the best way because it saves everybody time and hassle," Anurag - who also wanted his real name withheld to avoid trouble - told Al Jazeera from Sri Lanka.

"Although the illicit racket has flourished since the 1990s, social media has catapulted the trade into a new dimension. Brokers like Vikas and Aadarsh are openly lurking on dozens of Facebook pages fashioned as kidney and transplant support groups.

HT: Mohammad Akbarpour

The kidney market in Iran: Russ Roberts interviews Tina Rosenberg (podcast)

This summer, Tina Rosenberg of the NY Times wrote about the Iranian kidney market, which I blogged about here:  Iran's market for kidneys in the NY Times

Now Russ Roberts at EconTalk has a podcast in which he interviews her:Tina Rosenberg on the Kidney Market in Iran

(He starts off by saying that in the podcast he did with me, I mentioned that there was a cash market in Iran, but he hadn't had time to follow up on that...)

Ms. Rosenberg spends some time talking about the fact that Iranian donors seem to feel stigmatized by selling a kidney, and prefer to remain anonymous, sometimes to the extent of not coming in for post surgical care, having given false contact information to the administrators involved.

Is it time to compensate kidney donors?

Tina Rosenberg in the NY Times thinks it is: It’s Time to Compensate Kidney Donors

"Still, a debate is beginning to emerge. In the United States, some prominent kidney doctors believe we might learn something from Iran. “My journey was from ‘this is all immoral and we shouldn’t think about it’ to the other side,” said Robert Gaston, executive co-director of the Comprehensive Transplant Institute at the University of Alabama at Birmingham, and a recent past president of the American Society of Transplantation, one of two American organizations of transplant doctors. “Iran’s program can’t be termed a universal success. But it is a reasonable approach, a transparent, ethical way to address kidney disease in the population there.”

While no country seems willing to follow Iran into providing monetary incentives for kidney donors, many are starting to remove the financial disincentives that make donating a kidney an activity only for those with disposable income."

First kidney exchange in South Africa

South Africa's Daily Maverick has the story:
Saving lives: South Africa joins paired kidney exchange revolution, ANDREA TEAGLE  SOUTH AFRICA 06 AUG 2015

"On March 6, 2015, South Africa’s first kidney exchange took place at the Donald Gordon Medical Centre in Johannesburg. After having been kept alive by dialysis for years, 24-year-old Vivek [not his real name] and 60-year-old Allison Stevenson were both given a new lease on life.
...
"This was South Africa’s first paired kidney exchange. And it happened almost by chance.
“This youngster in Port Elizabeth – his mother was so anxious about him, she phoned the transplant centre in Johannesburg … It was like the next week that I phoned up.” Stevenson recalls, “And there, Belinda (a transplant coordinator), had this file on her desk, where the aunt didn’t match the nephew. It just so happened that she matched me, and Sally matched Vivek.”
...
"South Africa relies primarily on deceased kidney donations. Of the 4,300 people on the waiting list for life saving, most are waiting for a kidney. There is only a small hope of getting one: just 0.2% of the population are registered as organ donors. And a host of medical requirements need to be satisfied for a match. The waiting list is like a mile long tightrope to life and many people never make it across.
...
"This is an example of what economists call a mismatched market. And for at least one economist, Stanford Professor Alvin Roth, it posed an exciting challenge. Roth and his colleagues were able to apply a model to the problem they had initially built out of mathematical curiosity. In 2012, this work won him a joint Nobel Prize in Economics.
Roth’s matching program builds little bridges between supply and demand. The simplest case is a two-way exchange like Stevenson’s. By decoupling the donors from their intended (but incompatible) recipients, and recoupling them with compatible ones, long chains of transplants can take place that otherwise would have been impossible.
...
"In South Africa this type of optimised matching is but a dream.
The National Health Act allows for living donors to donate to a blood relative or a spouse. If the donor is not a relative, he or she must apply for special permission from the Department of Health. In South Africa – as in every other country in the world with the exception of Iran – the sale of organs is illegal.
The hesitancy to implement paired matching, although the law does not in fact prohibit it, is likely partly due to fear of abuses through monetary exchange. (It is, however, lawful for the donor to be reimbursed for “reasonable costs” associated with the transplant.)
However, Stevenson’s case shows that paired exchanges can be subjected to the same careful scrutiny as direct donations. Only after establishing that neither donor had been coerced, misled or financially incentivised, did the Department of Health give the go-ahead. Further, the pairs were not allowed to meet or communicate prior to the operation, so Stevenson has never met her actual donor.
...
"The successful matching is an important step towards overcoming what surgeon Francis Delmonico, who was involved in the original matching program in the US, described as “the frustration of a biological obstacle to transplantation”. However, without a registry of living donors, finding a paired match will require hours of effort, and many will not be as lucky as Stevenson."

Iran's market for kidneys in the NY Times

Tina Rosenberg writes about the Iranian kidney market: Need a Kidney? Not Iranian? You’ll Wait.

Here's a part:

"Iran’s system has many deficiencies — not least that the very idea clashes with ethical norms observed in many other countries — and the program varies greatly from region to region. But its chief advantage is this: People who need kidneys get them rapidly, rather than die on the waiting list.

In the vast majority of cases, donors know in advance what they will be paid and receive appropriate screening and good medical care before and during the operation. And by getting patients new kidneys instead of keeping them on dialysis, the society saves a lot of money and avoids much misery.

The Iranian model suffers from insufficient funding, lack of follow-up for donors and other problems. But as waiting lists for kidneys grow around the world, Iran offers an important lesson: With good design and regulation, a system that pays donors need not be exploitative or immoral. In Iran, the legal kidney market has prevented the development of the abusive black markets and kidney tourism seen in other countries. As the kidney crisis intensifies, governments should look closely at what Iran has achieved.

For many people, the specifics of how a kidney market works are beside the point — the very idea of paying people to donate organs ends the debate before it starts.

One reason the idea of organ-selling is repugnant is that the human body has a special dignity. But if there’s an ethical barrier to selling the pieces, it was crossed long ago. We sell blood products, sperm and eggs. We pay people to do weird things to their bodies in risky clinical trials.

Perhaps kidney donation is different because kidneys do not grow back (although one healthy kidney is sufficient), and donation requires surgery. It is very safe surgery, but there is always some risk for donors. Perhaps the biggest moral issue in economically unequal societies is that a paid donor is almost always in dire straits, willing to do desperate things for money.

Yet people, especially poor people, take risks for money all the time. “We should ask ourselves why some people find accepting money to donate a kidney and save a life repugnant, but accepting money for being a policeman or miner or soldier — all of which are statistically riskier than donating a kidney — is O.K.,” said Mohammad Akbarpour, a research fellow in the Becker-Friedman Institute of the University of Chicago. “Is there a fundamental difference?”

The Shi'a religious jurisprudence behind Iran's legal market for kidneys

An anthropology graduate student named Elham Mireshghi is studying the market for kidneys in Iran, and includes in her study some interesting observations about the Shi'a fatwas on donation, brain death, and donor compensation that give the market its religious justification.

I haven't seen her paper yet, but she is presenting a paper in Chicago at the U. Chicago Program on Medicine and Religion's
2nd Annual Islamic Bioethics Workshop--Dissecting the Ethics of Organ Donation (June 5-7). Her tantalizing slides are here.

She writes that concern whether transplantation itself was permissible loomed larger than the issue of sales, and that Ayatullah Khomeini initially prohibited transplantation, but that this ruling was changed after it became accepted that the transplanted organ became part of the body of the recipient once blood flowed through it.

Regarding compensation of the donors, she argues that the distinction between a gift and a sale was avoided by framing the question not as

“Can a kidney be bought and henceforth removed and transplanted into a new body,”

but rather as

 “now that a kidney has been removed for the legitimate purpose of being transplanted, can the owner of the kidney receive payment for it?”

I'm looking forward to reading the paper...


HT: Jim Childress, Mario Macis

The Guardian on Iranian kidney sales

The Guardian reports on a bad outcome in Iran's market for kidneys--the recipient dies, and the donor isn't doing well: Kidneys for sale: Iran’s trade in organs

"Iran is the only country in the world where it is legal to sell a kidney. Donors get money from the buyer and from the state, a system which eradicated waiting lists but, detractors say, exploits the poor and vulnerable. Here, we follow one terrible story"

Sally Satel: more on compensating kidney donors

April 18 in The Pacific Standard: Sally Satel on The case for compensating kidney donors

"The current system is a qualified failure. For the past decade, transplant operations for all organs have hovered between 27,000 and 29,000 annually, and, in 2014, was the lowest it's been in 11 years.The European model of "presumed consent," wherein a person's organs are taken posthumously unless an individual has specifically forbidden their retrieval, is not a potent solution as less than one percent of deceased individuals are medically eligible to donate.

"Hence, there is a desperate organ shortage in the United States. The situation in other countries, especially poorer countries without good access to dialysis — a death sentence without immediate transplant — is even worse. As a result, the overseas black market is burgeoning. The World Health Organization estimates that 10 percent of all transplants are performed under shadowy, illicit conditions where the risks are high: Corrupt brokers deceive impoverished and illiterate donors about the nature of surgery, cheat them out of payment, and ignore their post-surgical needs. For the recipient, organ quality can be poor and post-operative management dicey. (The exception appears to be Iran, where organ sales are monitored by the government. There, potential donors exceed the number of needy patients.)
...
"Compensating organ donors is not a new idea. In 1983, Al Gore, who championed NOTA, explicitly suggested rewarding donors if altruistic volunteering did not keep up with demand. Moreover, NOTA's legislativehistory implies that the law's felony provision against "valuable consideration" in exchange for an organ was intended to prohibit brokered or direct cash sales between buyer and seller. It is silent regarding a system of in-kind, third-party compensation.

Here is a plan for donor benefits: A governmental entity, or a designated charity, would offer in-kind rewards, like a contribution to the donor's retirement fund, an income tax credit, or a tuition voucher worth roughly $50,000 in value. (This is the amount typically proposed by advocates of incentives.) To enhance deceased donation, a funeral benefit could be offered.

With a third party providing the reward, all recipients, not just the financially secure, will benefit. An imposed waiting period of at least six months would help limit impulsive live donation and, most important, any subsequent remorse. Prospective donors would be carefully screened for physical and emotional health, as is done for all donors currently. Their kidneys could be distributed, according to exiting allocation policies now in place for cadaver organs.

Donors would be guaranteed follow-up medical care for any complications, which is not ensured now. And the cost of the benefits could be underwritten by the enormous savings from dialysis.

Will rewarded donation attract only low-income prospective donors? Perhaps. One option is to require a minimum income for donors, but that strategy prevents all interested parties from participating. Better to start with the assumption that low-income people are capable of making decisions in their own interest. In the end, regardless of who ends up donating, a sound plan ensuring that donors are thoroughly informed, their health protected, and their sacrifice amply rewarded is an ethical one.

How to achieve this? We should start with pilot projects. The Department of Health and Human Services probably could initiate pilot trials, if motivated. The Center for Medicare and Medicaid Innovation has impressively broad authority. In theory, the Center could issue NOTA waivers to academic medical centers interested in administering a pilot program wherein living donors would be rewarded with five years of Medicare coverage.

States should also get involved. The late Pennsylvania Governor Robert P. Casey, who had received a heart and liver transplant a year earlier, signed a 1994 law that would enable a bereaved family of an organ donor to get a burial benefit of up to $3,000 paid by the state directly to the funeral home. State health officials ended up with cold feet, fearing that the law flouted NOTA, but some bold state should proceed with a funeral benefit and force the Department of Justice to action, spurring a vital national debate in the process.

Congressional action is another approach. Lawmakers could amend NOTA to permit pilot trials of incentives by clarifying the intent of the law as a restraint on cash exchange between buyer and seller with or without a broker. The need for a new approach to expanding the supply of donors should resonate with lawmakers on several levels. The first is public health (needless deaths), the second is fiscal (the enormous cost to Medicare — roughly seven percent of its budget is spent on dialysis and its complications), the third is human rights (the global black market); and the fourth is race (minorities are disproportionately disadvantaged by the organ shortage as they are less likely to be referred for transplant)."

In defense of pilot studies for organ donor incentives

The third in the series of forthcoming AJT papers about incentives/disincentives for donation discusses the basis for pilot studies (see earlier posts 1 and 2)

Between Scylla and Charybdis: Charting an Ethical Course for Research Into Financial Incentives for Living Kidney Donation
J. S. Fisher1, Z. Butt, J. Friedewald, S. Fry-Revere, J. Hanneman, M. L. Henderson, K. Ladin, H. Mysel, L. Preczewski, L. A. Sherman, C. Thiessen andE. J. Gordon*
Article first published online: 31 MAR 2015
DOI: 10.1111/ajt.13234

"The transplant community appears to be in a state of equipoise regarding the ethical soundness of empirically investigating a regulated system of financial incentives for living kidney donation. ...Proponents of financial incentives for nondirected living donors posit that incentives would increase the supply of high quality organs, prolong quantity, improve quality of life of recipients, and offset the societal cost by reducing the patient population receiving dialysis [10, 11]. Opponents argue that financial compensation beyond recovering expenses would: (1) cause undue pressure to donate, (2) exploit at-risk individuals (such as the poor), (3) commodify the human body, (4) exacerbate disparities in access to transplants between different socioeconomic strata, and (5) negatively impact public opinion and potentially lead to decreased organ donation rates [12, 13]. However, the debate over the intended and unintended effects of a federally regulated system of financial incentives in the United States remains unresolved partly due to a lack of empirical data.

Critics commonly turn to national programs outside the United States (e.g. India, China, Philippines, Eastern Europe) where black market incentives are the rule to justify concerns that financial incentives are exploitative of living donors. We do not disagree that paying donors illegally is exploitive. Other countries like Israel, Saudi Arabia, Iran, Singapore, and Ireland, however, have implemented legal compensation policies that assist living kidney donors to varying degrees and with varying success. However, these programs developed organically without extensive transparency or oversight, rather than as part of a prospective study designed with embedded outcome measures. Thus, it is unclear whether the successes of such policies are translatable to the US context given the differences in our governmental, medical, and societal infrastructures. Until rigorous, relevant data are properly collected, there is no way to determine whether concerns are warranted about potentially adverse effects of financial incentives on patient safety, exploitation, autonomy, and public trust as part of a US federally regulated system.

Members from several academic and professional organizations have called for pilot studies to investigate the provision of financial incentives to eligible living kidney donors to increase donation rates [14-17]. Logistical parameters for such studies have been suggested [18, 19]. However, while proposals for pilot studies commonly advance arguments for financial incentives, they have not systematically addressed the ethical concerns raised by opponents of a pilot study. This paper provides an ethical justification for conducting a pilot trial to study the feasibility and impact of a federally regulated system utilizing financial incentives on living kidney donation rates.''
...
in conclusion...
"the first step to resolve equipoise will require one or more carefully designed pilot studies to assess individual perceptions to determine if a course can be charted between exploitation and undue influence. Only such pilot studies can inform the transplant community as to whether larger, randomized controlled trials may be ethically undertaken to determine if ultimately, a federally regulated financial incentives program could feasibly and effectively increase living kidney donation rates without living donors incurring perceptions of negative psychological experience or generating negative public reaction.

One surgeon's argument against compensating organ donors, but for removing financial disincentives

Here's another addition to the discussion of how and whether to incentivize live kidney donation, and/or remove financial disincentives to donating, by the medical director of Kidney and Pancreas Transplantation at New York Presbyterian Hospital/Columbia University Medical Center,


Cash for human kidneys: A bad idea is back, By David Jonathan Cohen, MD

Here's the part of his argument--about how incentives in a poorly regulated market could introduce lower quality kidneys from less medically qualified donors--that may be less familiar to readers of the "compensation for donors" posts on this blog. My comments follow...

"I’ve arrived at this position based on my three decades of experience as the medical director of one of the largest kidney transplant programs in the United States, performing more than 100 live donor transplants every year. In this role, as I examine potential live kidney donors, I have seen first-hand how far people will go to try to help loved ones. Many unsuitable donors try to persuade me to allow them to donate anyway, despite high medical risks. Others take steps even more extreme—and dangerous. Consider the 37-year-old woman who, without telling me, stopped her anti-depressants knowing that a history of depression might make her ineligible to donate to her friend. Or the 51-year-old cocaine addict who wanted to help her brother and forged a letter from her physician stating that the cocaine was treatment for a nasal condition. Had we not uncovered this, the outcome for donor and recipient would likely have been disastrous. 

Some go to other transplant centers and change their stories or covertly take medications to normalize their blood pressure or blood sugar in hopes of passing the evaluation, putting their own health at risk and potentially leading to the donation of unsuitable kidneys. 

Now imagine if there were a significant financial reward at stake, increasing the incentives to lie or dissemble. Many would surely do their best to disguise any medical conditions that might prevent them from donating in order to collect the reward, thereby adding to their own medical problems and potentially donating kidneys of lesser quality and thus harming the recipients. After all, they would now be donating to a stranger in order to enrich themselves or to address an urgent financial need, not to save a loved one. 

Doctors, too, would be confronted with terrible dilemmas. Take the potential donor who desperately needs cash or cash equivalent to prevent foreclosure on a home, pay for education for their children, or keep their business open. What is the responsible caring physician to do? It’s easy to say that this would not factor into a medical decision, but doctors are human. It’s hard to see how such considerations could be entirely avoided. " 

******************
This is just a small piece of the longer post, so take a look yourself.

I follow this whole debate closely, and I'm struck by how arguments about many aspects (both pro and con, or con and pro, depending on where you stand) are hampered by the lack of data. So arguments are theoretical, and it seems to me that many of the arguments used with confidence to support one conclusion could equally support the opposite.

Here, Dr Cohen notes the desperation which motivates the "many unsuitable donors" who would like to give a kidney to a loved one to conceal aspects of their medical history (so that they can donate anyway). He argues that would only get worse if kidneys could be purchased. (Just to fix ideas, let's suppose that kidneys could only be purchased by the Federal government, that they would be distributed as deceased donor kidneys now are--i.e. without too much regard to ability to pay--and that there would be stringent health checks before donation--and followup after.)  In such an environment, one could imagine that the need for potential donors to mis-represent their medical history would decrease, rather than increase, if, in this hypothetical world with payments, their loved ones would get transplants through the national system. (To be clear, I am also speaking here without data, since outside of Iran there aren't any legal markets for kidneys, and the Iranian market doesn't work at all like the hypothetical I've just described...)

Speaking of Iran, the same kind of argument-that-could-support-opposite-positions is made with respect to whether large monetary payments might 'coerce' unwilling or unsuitable donors to sell their kidneys. That's an interesting question, but Iranian surgeons have sensibly pointed out that there can be coercion without money: if your mom thinks you should give a kidney to your brother you might be coerced, and that kind of coercion might be decreased if kidneys were more available through e.g. a national market.

So...speaking as an experimental economist and market designer who has watched the waiting list for kidneys grow and grow (see my post on kidney statistics)...I'm increasingly inclined towards allowing the States to experiment cautiously with increasing incentives and removing disincentives to donation...

An economist's perspective on transplantation--in Transplantation (the journal)

I have a paper in the latest issue of the journal Transplantation, discussing some approaches to current challenges facing transplantation.

I discuss ways to extend kidney exchange by initiating nondirected donor chains with some deceased donor organs, and by developing  international kidney exchange (along the lines of what Mike Rees calls  reverse transplant tourism). Reducing barriers to participation by transplant centers would also help (e.g removing financial barriers with some kind of standard acquisition fee) and removing barriers for enrolling easy to match pairs, including compatible pairs.  I also discuss ways to increase deceased donor registration, including priorities for donors, and providing other kinds of incentive for donation.

Roth, Alvin E., “Transplantation: One Economist’s Perspective,” Transplantation, February 2015, 99, 2, 261–264

(this link will only get you to the first page; )

Here are some relevant passages from the rest of the paper:

"Extending the reach of kidney exchange

"One way to make kidney exchange accessible to more patients would be to simplify participation. Developing a standard acquisition charge for living donor kidneys  would remove some barriers that arise e.g. from different costs of nephrectomies at hospitals that may need to ship each other kidneys. And matching algorithms could be adjusted to guarantee hospitals that they and their patients won’t lose transplants or sacrifice patient care if they enroll all pairs in exchange (and not just hard-to-match pairs).17 Enrolling easy-to-match pairs, including compatible pairs, can be organized to help those pairs find better matches, and also makes it much easier to find matches for hard-to-match pairs.9, ,  Incentives for transplant centers to enroll their non-directed donors are already being implemented (a chain typically is terminated with a patient on the waiting list of a center that enrolled a non-directed donor).

"Another way to accomplish more transplants through exchange would be to allow some non-directed donor chains to be initiated with deceased donor kidneys1 which, properly organized, could facilitate more transplants and shorten the wait for deceased donor kidneys for all patients.

"Kidney exchange in the developed world could also be extended to patient-donor pairs from countries in which treatment for ESRD is essentially unavailable for large parts of the population.  Such patient-donor pairs could, for example, be invited to come to the U.S. to participate in kidney exchange , financed by the American taxpayer from the savings that result from removing an American from dialysis through receiving a transplant, which are more than sufficient to finance the additional surgeries.  (The bureaucratic obstacles to such exchanges and financial arrangements will be formidable, but the potential to aid both domestic and foreign patients is substantial.)

How else to increase donation?

"There remain many avenues other than kidney exchange through which the shortage of transplantable organs might be reduced.

"In the U.S., the scope for recovering many more transplantable organs from deceased donors seems somewhat limited for most organs, given current technology and recovery rates. But there is suggestive evidence that more frequent opportunities to register as a deceased donor would increase registration, and that the manner in which registration is solicited can influence rates of family consent for donation.

"There is growing consensus that donors should not face financial disincentives from donating, ,  and recent evidence that the costs borne by living donors are substantial enough to reduce donation in recessions. ,  There is consequently great interest in exploring ways to remove disincentives or provide inducements for donation.

"Several novel features of recent Israeli legislation are worth study.  Deceased donation is encouraged by giving registered donors and next-of-kin of deceased donors some priority to receive deceased donor organs. Living kidney donors are also reimbursed 40 days wages, at their own wage rate, to offset the costs of donation. Initial indications are that the new Israeli law is increasing donation.

"The most contentious part of the discussion of how to increase donation concerns cash compensation to donors, particularly living kidney donors. With the prominent exception of Iran, which specifically permits cash payments for kidneys , there does not appear to be a legal market for the purchase and sale of organs for transplant anywhere else, although illegal black markets are widely reported, and occasionally prosecuted.

"However the critical shortage of transplantable organs around the world prompts continual discussion of whether to relax the ban on cash compensation. For example, the March 2014 issue of the Journal of Medical Ethics devoted five articles to the subject, all by philosophers. While this discussion is too important to be left only to philosophers, neither can it be confined to the ongoing debate among transplant professionals, given the public resources devoted to transplantation and the important implications transplantation has for health policy.

"The arguments, pro and con, will already be largely familiar to those who follow this debate.  I will simply try to add some context to the discussion by noting that the ban on organ sales is not unique: other kinds of markets have also been banned in the past, and presently, and laws have changed over time.

"Of course, banning markets does not always end them: black markets for narcotics make clear that outlawing markets is simpler than abolishing them. In the United States, the manufacture and sale of alcoholic beverages was illegal from 1920 to 1933, during which time black markets for alcohol thrived. Less familiarly, an 1824 editorial in The Lancet comments on the black market in which medical schools bought cadavers for dissection from grave robbers, known as “resurrection men,” because the only cadavers that could legally be dissected were from executed murderers.  (The Anatomy Act of 1832 expanded the sources of legal cadavers for dissection in Britain.)

"Let’s call a transaction repugnant if some people want to engage in it, and others, who aren’t materially affected, don’t think they should be allowed to .

"By this definition, sales of kidneys are widely repugnant, as are (or were) the sale of narcotics, alcohol, and cadavers. But note that the ban on kidney sales is different from these other bans, since there is, or was, general disapproval of narcotics, alcohol, and dissection. But there is no similar disapproval of kidney donation and transplantation; it is only sales that are repugnant.

"This turns out not to be too unusual: a transaction that is not otherwise repugnant sometimes becomes so when money is added to the mix. For example, charging interest on loans was largely banned in medieval Europe, although loans were permitted. (The relaxation of that ban has had profound effects on the modern economy.)  Note that repugnance doesn’t only change in one direction—some transactions that used not to be repugnant are widely banned today. Indentured servitude, for example, is no longer legal in the U.S., although it was once a common way of purchasing passage across the Atlantic.41

"Some transactions are banned in some places and not others, e.g. those concerning sale of blood and blood products, and reproductive goods and services such as sperm, eggs, and surrogacy. Legal markets in some places and not others give rise to “fertility tourism,” and many countries that ban payment for blood plasma import plasma products from the U.S., where such payments are legal.

"The repugnance to kidney sales involves concerns about the identity and welfare of potential sellers. The same concerns cause many proposals for allowing some forms of compensation to address the need to avoid exploiting the poor and vulnerable, as existing black markets for kidneys are widely seen to do.  The debate on how to proceed seems likely to focus on removing disincentives to donate and providing incentives that are not seen as leading to coercive or exploitative situations. The debate can be furthered by identifying specific sources of repugnance, and considering how inducements could be structured to avoid them. , ,

"In the meantime, kidney exchange has proved to be a way of bringing some of the benefits of exchange to transplantation without running into the barrier of repugnance. So it seems promising to consider ways of extending its reach, as discussed above."